Thursday, October 11, 2007

And again

In a lot of ways, I've come to peace with Kiki's Downs. I'm not sure how to explain how exactly. This will probably sound odd when spoken aloud.

When I found out about her having Downs, I had three major blows to the gut over it. One was knowing that the world is full of people like me who are uncomfortable around others with disabilities; two was knowing she would never be the brilliant prep school prodigy of my dreams; and the third was knowing that statistically speaking, I will more than likely outlive her.

The funny thing is what finally snapped me out of the pity spiral. Obviously, just spending time with her, I've fallen so in love with her that I -- I can't even express the depth of it. But for a long time, there would times I would hold her while she was sleeping, and I'd feel this overwhelming love for her, and then this extraordinary sadness, and I would just cry.

I struggled with all three, trying to figure out a way to conquer them all. And one day, while I was feeling sorry for myself that I would some day lose her, I thought, "Well, what's the alternative?" There's only one. Either she dies before I do; or I die before she does.

My response to this epiphany was immediate, matter-of-fact, and finally shook some good solid sense into me. It is simply NOT acceptable for me to die before her. I will not abandon her. It will not happen.

This somehow put everything else into perspective, like a giant mess of machinery that suddenly up and clicked together and started running smoothly.

It doesn't matter if the rest of the world out there doesn't know how to behave themselves around her. I'm not their mother. I'm her mother. I will protect her with a buffer of close friends and family who love her unconditionally, as I do, until she grows into her own and expands her buffer. The rest is incidental.

All I care about, all that is important, is that she be happy and content, confident in her own skin, and self-reliant to whatever extent makes her feel strong and capable. In the end, it all boils down to, if she is well-rounded and happy, then I have nothing to be unhappy about.

That said, I have been remarkably positive lately. I haven't cried while holding her in over a month. I actually for the first time feel up to any challenge that comes up.

And that said, I still get my panties in a twist over things that I refuse to accept. People still say things to me that absolutely boggle me, and they say them with the intent to be supportive which absolutely kills me. One person, who works in an institution environment with people who have Downs, who has an uncle with Downs, was telling me about the people she works with. She mentioned a 12-year-old girl, who she called high-functioning, who was able to dress herself; but she was *high functioning*, with emphasis, which implied to me that that was a high bar for me to set for Kiki.

And today someone who has worked with austistic and Downs children in the past offered to babysit sometime, making sure to point out her experience with Downs children, and then backed off that to apologetically point out that she's aware at Kiki's age there's no difference in care between her and any other baby. But then went on to add that the milestone lapses and special care requirements will come later, in probably a year or so.

I just don't get it, really. On one hand, I want to think, these aren't ignorant people; these are people with experience in this arena, while I am completely and utterly the newbie.

And yet, I can't stop thinking that if I lower the bar on her, it will cripple her. I continuously find and read things that foster hope in me that she has the potential for greater things than just being able to brush her teeth without assistance. I feel like not having that hope just means giving up on her, and I cannot do that.

And that is all.


YarnHacker K October 12, 2007 at 7:35 AM  

The wonderful thing about all babies is that they are the very embodiment of potential. They're such complete unknowns and they can all wind up surprising us - and do. Yes, there will be things Kiki doesn't, or can't, do. There are things I can't do. There are things you can't do. That's the human condition. No more, no less. Anyone who wants to start putting her in categories now is nuts. And anyone who wants to do it later isn't looking very hard.

Jezebel October 12, 2007 at 1:44 PM  

I love you.

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